Treating
fetal alcohol syndrome
Emporia clinic hopes to diagnose, educate and prevent FAS
EMPORIA -- It is
his first full day of summer vacation and Lance Sutton has to be coaxed to skip
down the hallway of the Flint Hills Community Health Center.
Even the sight of
his hosts for the day, staff members of the Fetal Alcohol Syndrome Clinic,
skipping in unison isn't enough to inspire the 6-year-old.
The promise of
peanut M&Ms didn't work either.
Nancy Devenport, a
speech therapist with the FAS clinic says Lance isn't refusing to skip. And it
isn't that he can't do it. Lance and other children who have been exposed to
alcohol while in their mother's womb just don't think, move or behave like
other children, she said.
"Their
brains work differently, they function differently, they're wired differently.
That's what we have to make everyone else understand," Devenport said.
One morning a
month, the half-dozen team members of the FAS clinic try to make people
understand the dangers of consuming alcohol while pregnant. A pilot program
sponsored with $15,000 each from the state Legislature and the community, the
clinic is the only one of its kind in the state. At its monthly meeting, the
team takes one patient through several hours of testing, looking at the child's
motor, memory and thinking skills, and conducting physical and psychological
exams.
Clinicians look for
four characteristics to diagnosis FAS: growth deficiencies, such facial
features as small eyes placed far apart; brain dysfunction and known prenatal
alcohol exposure. Children who don't meet all criteria are diagnosed with
alcohol-related neurodevelopment disorders.
Once a child is
diagnosed, all clinicians can do is offer suggestions to the child's guardians
and school on how to cope with what one of the clinic's founders, Dr. James
Barnett, calls an "invisible handicap."
About seven states
have such clinics, said Barnett, a Republican state senator from Emporia.
Team members,
including psychologists, physicians and therapists, traveled to the University
of Washington in November 2001 to learn about FAS and how to operate a clinic.
Their work time, about eight hours a month, is donated by their employers.
Lance, of Emporia,
is the ninth patient to be seen at the clinic, and was referred by his school,
said Elizabeth Sutton, his grandmother.
Children between
the ages of 4 and 14 have come from all over the state and region to be tested
since the clinic opened in August. Most children wait two or three months before
being seen, and guardians and schools must submit piles of paperwork about the
child.
Watching the
clinic's physician, Dr. Jay Ciotti, test Lance's reflexes and balance, Barnett
said the clinic's primary goal is to prevent the syndrome, which can lower IQs,
impede growth, cause facial abnormalities and create behavioral problems. In
some cases, fetuses can die.
The syndrome is
entirely preventable with education, he said. The National Institute of Health
reports 39 percent of women of childbearing age know about fetal alcohol
syndrome.
"If you're
pregnant, you shouldn't drink. And if you drink, you shouldn't be
pregnant," he said.
The U.S. Public
Health Service says there is no safe amount of alcohol a woman can consume
while pregnant.
Each child affected
by prenatal alcohol consumption costs about $1.5 million through his lifetime
because of problems with school, criminal activity and employment, Barnett
said. Patients at the clinic pay what they can.
"The clinic
doesn't generate a lot of money. It has the potential to save lots of
money," Barnett said.
One or two children
per thousand live births are affected, but only one out of 10 children with FAS
is properly diagnosed, he said. Many of the children no longer are with their
birth parents, making it difficult to determine if alcohol was consumed.
Misunderstandings
occur when parents and teachers confuse the syndrome's neurological and motor
symptoms with the child having hyperactivity or behavioral problems, says
Stacey Handly, the clinic's occupational therapist.
It isn't that the
children don't want to behave themselves and work, it is that the kids don't
know what is going on, so they find something else to do, Handly said.
Problems could be
avoided if women simply abstained from alcohol while pregnant, clinic workers
say. But the message can be confusing, said Beverly Long, family advocate for
the team and an early childhood specialist at Emporia State University. When
she was pregnant in 1983, her doctor recommended she drink wine, but Long decided
not to. As a foster parent, she has experienced the difficulties of raising a
child with FAS.
Long goes to bars,
talking to patrons and posting signs about the dangers of expectant mothers
consuming alcohol. At a restaurant once, she says she overheard a man that had
been exposed to alcohol yelling at a pregnant woman at the bar, telling her
that her child could turn out like him. He had several ex-wives, former
employers and problems with the law.
Long walked over,
greeted the man with a hug and took him back to her table, leaving the pregnant
woman alone at the bar.
"I think she got the message," Long said.
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Source: The Topeka Capital-Journal